What to do when there are no more treatment options left

The Bottom Line

These words are hard to write, because I want to live. I am sad — sick to my stomach — about my imminent death. I've cried today. I will cry tomorrow.

I'm dying. That's confirmed. That's the bottom line for this column. Here's the longer version of this story:

I was at Duke University Medical Center a few weeks ago. I've been getting brain tumor treatment at Duke for going on seven years. These people at Duke are amazing, warm, caring, and very good at their jobs. I love them all. I went to Duke to have an MRI and to talk with the team about what the MRI results mean for me. I've assumed for a while now that the news would not be good.

What's happened, so very dramatically, in the past few weeks? My speech is getting worse. I say the wrong words pretty frequently. I have a hard time reading or typing anything on a computer screen. Thank god for voice recognition software. Using my right hand has become increasingly difficult. My sense of balance is really bad. I fall down
very easily at some times during the day, and those times are difficult
to predict.

These changes have been such a surprise. I've never before experienced changes this quickly, as a result of the tumor. My body is so very different than it was just a month ago.

As I've written before, I have already been told that I likely only have months to live. After a day of driving, MRI scanning, waiting, and talking, here's what I learned that's new:

My brain tumor is much bigger. The tumor is now in places it's never been before. And, not surprisingly, my brain is swelling from all the tumor growth. All of my symptoms are fully explained by the changes in the tumor.

Over the past seven years, I have had two brain surgeries, a once-in-a-lifetime radiation treatment, every chemotherapy drug worth trying, and tumor-treating electrical fields. I'm not a candidate for any clinical trials.

There are no treatment options left. There's no reason to stay with the treatments I am now on, as they haven't been effective.

So, what comes next?

In a matter of months, I am going to die. In three months to a year, I will be gone.

These words are hard to write, because I want to live. I am sad — sick to my stomach — about my imminent death. I've cried today. I will cry tomorrow. I can't imagine a day without tears any time soon.

I want to live for my daughter, my family, my husband, my friends. I want to teach, to write, to try new things. Most of all, I want to see my daughter grow up.

We can't know how long I will live, exactly, or how long I will be able to walk, talk, and write. I will have more time to think this through over the coming weeks. This is what I know:

I will have no more appointments at Duke. These amazing, kind people can't do anything more for me. I will spend my remaining time with the people I love. It is about time for Maybelle to learn how to ride a real bicycle. I'd like to see that happen this summer. From now on, I am eating anything I damned well please.

I am extremely pleased that I am no longer going to have to wear electrodes, shave my head, and wear a backpack full of medical gear. The Optune people are pleasant, but I am totally over having four electrical wires trailing behind me all the time.

I am so grateful for the people who have loved me, cared for me, fed me, sent me messages of hope and support.

P.S. My husband Brian helped me with this post,because I can no longer write anything this long without editorial assistance, which is really irritating, on top of everything else.